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You might not think about what your liver is doing every minute of every day, but this hidden organ is central to our body’s health — and it’s the center of the American Liver Foundation’s work. The core constituency of the American Liver Foundation is liver patients and their families. Reaching them has been the Foundation’s mission since they were founded in the 1970’s by AASLD (American Association for the Study of Liver Diseases) according to Tom Nealon, the National Board Chair.

Now, education and outreach is needed more than ever, he said, in order to be sure that patients and families learn about the new therapies just approved for more effective treatment of hepatitis C, a liver infection affecting over 3 million in the United States alone.

Everyday Health spoke with Mr. Nealon about what inspired him to become part of the American Liver Foundation. Find out why he’s excited about the hope new hepatitis C medications bring to people who may have liver disease — but not even know it yet.

Shining a Light on Liver Diseases

Everyday Health: What inspired you to first become part of the American Liver Foundation (ALF)?

Tom Nealon: Somewhat late in life — I was 50 years old — I said, "You know what, I think I’m going to run a marathon." So I ran my first marathon the week after my 50th birthday. Years later I said, "You know, I’d love to run Boston." But for Boston, you have to qualify by time. You can probably gather, given my age and other factors, I was not going to qualify for Boston. So I got affiliated with the American Liver Foundation to run that first year by committing to raise money. They made you commit to raising $2,500 — I raised $16,000!

The remarkable part of that is, as I always say, "A funny thing happened on my way to just wanting to run Boston." I got hooked with the American Liver Foundation, and more importantly matched up with a little boy who was born with biliary atresia, [a chronic liver disease] named Zachary. Well, Zach was only 1 at the time, and now he’s 11. We are best friends forever, BFF, as we say.

He and I have been together raising funds for the American Liver Foundation since that time around the country and in various ways. For the last 11 years, we’ve had a fundraising campaign going. We have raised 1.3 million dollars during that time frame — which I guess caught the attention of the American Liver Foundation Board itself — and I became a member 5 years ago.

In essence, I am running it day to day now. It’s actually a gift now at this point in my life since I’m 66 next month. I still have a full-time job, but for the most part I devote a substantial amount of my time to working on the ALF and its issues. I travel around the country to our various divisions and speak at events that are held there and speak on behalf of ALF.

I think one of our struggles…is people talk about lots of diseases, but nobody talks about liver disease. Whether it’s because of stigma or whether it’s because people just as soon keep it secret. You know, people talk about HIV. People talk about cancer. People talk about heart disease and stroke and heart attacks. But virtually no one ever talks about liver disease, and it is by all estimates certainly one of the largest diseases facing America at the present time.

What’s happening with hepatitis C is so exciting because it is a monumental change in the landscape.

EH: In your work with the ALF, have you seen that liver transplants are sometimes due to hepatitis C?

Nealon: Oh yes, certainly, I mean it’s one of the most common causes of that because the unfortunate cycle, and it’s really the insidious nature of hepatitis C — why they call it the silent epidemic — is that it can live somewhat dormant in the body for not just years but decades. By the time it manifests itself, cirrhosis may be there, at a point in time where the only possibility for survival is a transplant.

It’s certainly a major factor. The thought that there could be a regimen of treatment that would prevent hepatitis C from getting to that stage of causing cirrhosis, would mean that there would be fewer transplants needed for hepatitis C. This would make them available for people with biliary atresia or other forms of liver disease, primary sclerosing cholangitis…I meant there’s a whole laundry list of liver diseases that ultimately can necessitate a transplant.

It would be wonderful to remove as many cases as possible of hepatitis C being the reason that people needed a transplant.

Getting Tested for Hepatitis C

EH: Can people carry hepatitis C in their blood and not realize they were infected?

Tom Nealon: The estimates are that over 3 million Americans suffer from liver disease [from hep C] and 75 percent of people do not realize it, which is highly unfortunate. It’s certainly why the CDC [U. S. Centers for Disease Control and Prevention] recommended that baby boomers born between 1945 and 1965 should get tested.

I think the exciting news and hopefully the news that people will come to focus on, is there may have been a time not so long ago where you would say, "Well now, isn’t that wonderful. Now I know I’m living with liver disease." But now, knowing you’re living with liver disease has, actually, the potential for not only a positive ending but a glorious ending. The drugs that are there, plus the new ones that have been approved, give a great likelihood of cure.

This regimen of drugs being able to cure and perhaps eradicate hepatitis C — that doesn’t happen very often in our lifetimes, that a regimen of drugs can be introduced that give that kind of potential for a life-changing experience for the people who are suffering from it. Going forward this means that hepatitis C will not pose the health threat that it does today. Obviously there’s a large population for whom being unaware that they have disease, only means that by the time they do become aware, their physical condition and their ability to fight the disease as well as be able to sustain any type of treatment — is only that much more difficult.

We strongly support and welcome the CDC’s encouragement that baby boomers get tested to find out. Because the earlier you find out, with these new treatments the likelihood of it being relatively short and relatively easy to head off some of the dire effects that hepatitis C has, is good.

New Treatments with Potential to Cure Hep C

Nealon: These regimens have promise to both be shorter in duration but certainly also less dire in terms of their effects on the individual while they’re undergoing the treatments. In the past, the nature of the treatment, particularly the heavy reliance on interferon, meant that it was particularly debilitating and made it difficult for people who were going through that regimen to have normal lives. Now, the expectation with these new drugs is that it will be a much shorter duration, and will have far fewer side effects and certainly less hospitalizations than have been required in the past.

I think that the exciting part for people who may come to the realization that they have hepatitis C is that it doesn’t have to be as life-changing and as debilitating to their normal lifestyle to go through the treatment regimen.

EH: Would you say the new treatments promise a cure?

Nealon: Well, I think there is a strong potential that a cure is there. One of the doctors who is on the national board with me and is the chairman of our national medical advisory committee, Dr. Hillel Tobias, says that there is every reason to be optimistic that this offers a potential cure. There certainly are cases of people being cured. Even beyond that, there is the possibility to eradicate the disease entirely.

The End of Waiting to Treat Hep C

EH: I think some people were even waiting for the new drugs for hepatitis C before they started treatment, is that right?

Nealon: Right, probably even, quite honestly, waiting to be tested. Clearly, this is a large amount of the population — if we’re saying 3.2 million people suffer from it but 75 percent don’t realize it. There are many people who need to be tested, so we’re hoping that those who were not tested will now be tested.

There are those who were tested but have been sort of sitting on the sidelines. Estimates are that these are up to 90 percent of that 3.2 million people — that haven’t even been treated. And obviously there is a part of the population that may be aware they have it but thus far has not acted.

The good news is that while these drugs are now coming on the market, there are many more following in line. It’s become a very active area, which is certainly not unusual that when there’s a breakthrough, that then many of the pharmaceutical companies jump on board, all battling to have the latest drug.

That’s good news for patients because it means that presumably each one that’s coming out will have even a greater likelihood of success and less side effects. That’s clearly the direction that the patients would like these drugs to go. There’s at the present time keen interest in the development of those drugs which bodes well for the patients, some of whom are aware that they have liver disease but others who may not be aware that they have it.

Learn More about Hep C

EH: Do you have any resources you would like to share with readers?

Nealon: We have for a number of years a hep C 1,2,3 program that you can access at liverfoundation.org which is a resource in terms of understanding the disease — understanding the challenges that are posed by it. More importantly it gives a comprehensive overview of treatment testing and resources that are out there and it's one of those things that we think is incredibly valuable for patients in this day and age — to be able to educate themselves as much as possible.

You may not be able to get to see your physician as often as you would like or as quickly as you would like, but we would like to think this provides some really vitally important information on a critically important disease, there to assist patients and their families while they try to make some very important decisions.

YOUR VIEWS: Have you been tested for hepatitis C? Please share your story in the comments box.

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